Today has been a good day for Ryan. His first class was not until 1:00 p.m. so he had a casual morning, almost too casual. They were admitting another patient today about the same time that Ryan was getting up for the day. We have learned the transfer procedure so we are able to use the hoist and get him out of his bed and into his chair. What we haven't been taught is how to switch him from the ventilator in his room to the portable ventilator on his chair. So we waited, and waited, and waited, over an hour. It can certainly try a person’s patience.
During his PT class today, they used a computer-imaging program to map the pressure points while he is sitting in his chair. As we have discussed previously, skin care is a major concern with SCI patients. Because they have no feeling and cannot adjust themselves, or shift positions to relieve an uncomfortable position, they must be moved every two hours while they are in bed and every 15 - 20 minutes when they are in their chair. This mapping program showed where his weight was hitting the cushion and was putting undue pressure on his skin. The cushion that he has in his chair has a gel pad to help shift the pressure. We again used the hoist to lift him up, out of his chair, while Audrey (PT) put the computer sensor pad on top of the seat. We then lowered Ryan back down on the seat. On the computer screen, we could see, in blue, where his pressure points were. Overall, it looked good. After trying a different seat and re-imaging, Audrey lowered his footrests to spread the pressure to his thighs. It is amazing the fine points of the care required for a spinal cord injury patient.
In his OT class today they spent most of the time modifying his headrest trying to give him support for his head and neck when he is in the recline position (weight shift). The headrest had been changed to give him some support on his lower neck, but it was painful. The one that was put on today is large enough to give him support, but it also covers the sore on the back of his head. So we used Velcro to attach some padding to the edges of the rest to give his head some support but allowing a space between the pads so it would not touch the sore. And I used to think that duct tape could fix anything. I have learned that Velcro is a quadriplegic's best friend. During this class, his ventilator began chirping indicating a low battery. Again, we waited and waited for respiratory to come and fix the problem. Sometimes it is tempting to call a "stat" to speed them up. I do remember a story about a boy that cried wolf, so I guess we had better behave.
On a separate note, we would like to thank those of you who made phone calls and contacts on Meredith's behalf. She has a job. She began working for a dentist in the Aurora area last Friday. She will be able to get 40 hours per week, which will help with her school next fall. I keep trying to get her to write one of these blog updates, but so far we haven’t been successful. She is a great person and is such a delight to have around. We really think a lot of her.
Yesterday, Ryan received an e-mail from Brian who attends the singles ward here in Denver. He is in the Philippines completing an internship for a law firm this summer. He and Ryan served in the same mission in the Philippines, however not at the same time. It was fun for Ryan to reminisce before he left and we are looking forward to his return to update Ryan on what is happening there. Ryan also has a cousin currently serving her mission in the Philippines (Ashley, don't get too trunky).
We have received e-mails from other missionaries who have expressed an interest in coming to see Ryan. He LOVES visitors. Please feel free to come, when it fits your schedule.
It truly has been a blessing to have so many people from many different parts of the world share their experiences with us as we go down this journey. We are so grateful for all of the love and support that we have received.
Dean, Terry, and Ryan
Monday, July 11, 2005
Sunday, July 10, 2005
Chicken and Dumplings
My apologies!!! When I go back and read the updates, I am “quite” amazed at all of the spelling and grammar errors; I will try to “quit” doing that!! I will have to let Bill Gates know that his Spell-Checker doesn’t work very well!! Or, could it be way too late and “quiet” when we write the updates – hopefully, you can “read between the lines.”
Any ideas for controlling dizziness and black outs??? Ryan continues to scare us! It is becoming a daily thing for him to go white in the face, then his eyes roll back into his head, and then he blacks out. I don’t think we will ever get used to that look!! Jackie his daytime tech said, “He should be past this by now.” He continues to get dizzy when he is up in his chair as well. His chair reclines so he sits, reclines, sits, reclines, sits and reclines, never getting comfortable. He will hardly drive his chair with the “sip and puff”, I think because he is somewhat fearful. I cannot blame him!!
Every second Friday they have what they call TGIF for Ryan’s group. They try to do something a little bit different from the usual therapy classes. As we went into the gym, we saw one of his group members, Scott. I asked Scott if he knew what they had planned and he said, “I think some kind of game or “wheelchair follow the leader!” There were only three of their group that were able to attend; Carolyn could not “drive” her chair so they decided to play a game. We played SORRY!! Scott, who is 50, was a little putout by the “game” idea. However, as they got into it, he and Ryan started bantering with each other and it turned out to be quite fun!! I think, like the fishing, they try to get the patients to interact and use their wit and wisdom, while strategizing and trying to “open new doors” and expand their minds; as that is all they have right now.
Ryan has had a sore on the back of his head, which in size is a little larger than a silver dollar. They think the sore began when his body would spasm and he would hit his head against the headrest on his chair. Grace, the Head of Nursing came in and completed a debridement of the hair and outer skin, which means she scraped off the dead skin and exposed the infected area. She said that it actually looked much better than she thought it would. After the procedure, they want the area to remain open to the air so that it can heal. Because the sore is right at the back of his head, they had to change the headrest on his wheelchair so that he will not put any pressure on or touch the area on anything. The new headrest is about 2 ” x 4” which is now at the base of his scull and does not give him very good support. He complained today of neck pain, so he thought it would be better to stay in bed. I hope that tomorrow we can find a different head/neck rest so he can sit comfortably in his chair.
Last night, we went over to “our apartment” and I fixed chicken and dumplings for all of us. I had to rethink how to cook!!! I haven’t prepared anything since May 4th!! Actually, I could get used to that, but the meals have become quite repetitive here at the hospital!! Ryan really enjoyed the “home cooked” meal!!
Ryan continued with his dizziness; after dinner, we watch a movie and then he got quite restless and began hurting. We came back over to his room; while on the way, we met up with his Bishop, Bishop Hatch and his wife Nancy. By the time we got back to the room, Ryan just wanted to get back in bed so we proceeded to assist him. As we were helping to get him settled in bed, Meredith was unbuttoning his shirt, and the Bishop asked if she was used to undressing her dates, especially in front of a Bishop. She just chuckled. He asked if he needed to have an interview with her – then he said, “Probably not, I am standing right here!!” For those of you who have not met Meredith, she turns a lovely shade of red. (And it wasn’t from the sun).
We have some fun things planned this week. Ryan is scheduled to go on a fishing outing on Wednesday; they have a “sip and puff” fishing pole that he will use!! They tell us that the lake is joined by a beautiful park with lots of wildlife, so it should be pretty fun. He is also signed up to go to the Denver Zoo on Saturday. We hope that the weather will hold and it won’t be to hot or wet!
We had lots of visitors today; several of the kids from the Singles Ward came by to visit, as well as some Whitaker cousins! A couple of the kids that came by are very talented with music. One of the young men, Zach, brought his guitar and sang a song along with a friend, Susanna. Zach took a couple of Hymns (Lead Kindly Light and Abide with Me) and created a beautiful arrangement. It was quite lovely. We are so impressed with the youth of today, they are so kind, loving and supportive to Ryan and we don’t even know any of them!! The Gospel is a beautiful thing! We hope that we can take Ryan to their Sacrament Meeting in a couple of weeks.
We hope that all is well with each of you. Thanks again for all of your love and support.
Dean, Terry and Ryan
Any ideas for controlling dizziness and black outs??? Ryan continues to scare us! It is becoming a daily thing for him to go white in the face, then his eyes roll back into his head, and then he blacks out. I don’t think we will ever get used to that look!! Jackie his daytime tech said, “He should be past this by now.” He continues to get dizzy when he is up in his chair as well. His chair reclines so he sits, reclines, sits, reclines, sits and reclines, never getting comfortable. He will hardly drive his chair with the “sip and puff”, I think because he is somewhat fearful. I cannot blame him!!
Every second Friday they have what they call TGIF for Ryan’s group. They try to do something a little bit different from the usual therapy classes. As we went into the gym, we saw one of his group members, Scott. I asked Scott if he knew what they had planned and he said, “I think some kind of game or “wheelchair follow the leader!” There were only three of their group that were able to attend; Carolyn could not “drive” her chair so they decided to play a game. We played SORRY!! Scott, who is 50, was a little putout by the “game” idea. However, as they got into it, he and Ryan started bantering with each other and it turned out to be quite fun!! I think, like the fishing, they try to get the patients to interact and use their wit and wisdom, while strategizing and trying to “open new doors” and expand their minds; as that is all they have right now.
Ryan has had a sore on the back of his head, which in size is a little larger than a silver dollar. They think the sore began when his body would spasm and he would hit his head against the headrest on his chair. Grace, the Head of Nursing came in and completed a debridement of the hair and outer skin, which means she scraped off the dead skin and exposed the infected area. She said that it actually looked much better than she thought it would. After the procedure, they want the area to remain open to the air so that it can heal. Because the sore is right at the back of his head, they had to change the headrest on his wheelchair so that he will not put any pressure on or touch the area on anything. The new headrest is about 2 ” x 4” which is now at the base of his scull and does not give him very good support. He complained today of neck pain, so he thought it would be better to stay in bed. I hope that tomorrow we can find a different head/neck rest so he can sit comfortably in his chair.
Last night, we went over to “our apartment” and I fixed chicken and dumplings for all of us. I had to rethink how to cook!!! I haven’t prepared anything since May 4th!! Actually, I could get used to that, but the meals have become quite repetitive here at the hospital!! Ryan really enjoyed the “home cooked” meal!!
Ryan continued with his dizziness; after dinner, we watch a movie and then he got quite restless and began hurting. We came back over to his room; while on the way, we met up with his Bishop, Bishop Hatch and his wife Nancy. By the time we got back to the room, Ryan just wanted to get back in bed so we proceeded to assist him. As we were helping to get him settled in bed, Meredith was unbuttoning his shirt, and the Bishop asked if she was used to undressing her dates, especially in front of a Bishop. She just chuckled. He asked if he needed to have an interview with her – then he said, “Probably not, I am standing right here!!” For those of you who have not met Meredith, she turns a lovely shade of red. (And it wasn’t from the sun).
We have some fun things planned this week. Ryan is scheduled to go on a fishing outing on Wednesday; they have a “sip and puff” fishing pole that he will use!! They tell us that the lake is joined by a beautiful park with lots of wildlife, so it should be pretty fun. He is also signed up to go to the Denver Zoo on Saturday. We hope that the weather will hold and it won’t be to hot or wet!
We had lots of visitors today; several of the kids from the Singles Ward came by to visit, as well as some Whitaker cousins! A couple of the kids that came by are very talented with music. One of the young men, Zach, brought his guitar and sang a song along with a friend, Susanna. Zach took a couple of Hymns (Lead Kindly Light and Abide with Me) and created a beautiful arrangement. It was quite lovely. We are so impressed with the youth of today, they are so kind, loving and supportive to Ryan and we don’t even know any of them!! The Gospel is a beautiful thing! We hope that we can take Ryan to their Sacrament Meeting in a couple of weeks.
We hope that all is well with each of you. Thanks again for all of your love and support.
Dean, Terry and Ryan
Friday, July 08, 2005
"Growing" Days
Oh, the ups and downs of Spinal Cord Injuries and the parents who don’t have a clue!!! Yesterday was not such a good day for Ryan. After our Family Conference, he had a downward spiral and it took him a day to recover!! It was quite an emotion day for him, he was also quiet dizzy all day and had a hard time even sitting up, he didn’t want to eat either (not good for his weight!).
He has a hard time sitting at a 90◦ degree angle anyway, so the Eye Doctor “tweaked” his glasses so he can see better when looking down towards his lap. Yesterday during his Occupational Therapy class, Dana showed him some different types of bookstands to use when reading or working on a project and a mouth stick to be used to turn pages or push buttons, etc. etc. He was not having it!! He told us later that he didn’t want to go home because he wasn’t going to be able to do anything like he had done before. We shed a few (or a lot) of tears and really didn’t have any answers for him other than, “It is going to be OK.” His night nurse (who is a doll!) came in and noticed that he wasn’t smiling as normal and she asked him how he was doing. He told her that he was having a bad day and she asked why. He told her that he “had thought about things too much all day.” She said, “Oh, you had a 'growing' day!” We never know who is going to say the right thing, but she hit the nail on the head!!! After we said prayers, we all went to bed and hoped that we could get some sleep!!!
Sleep helps, a bright new day and things look much better!! Ryan was smiling again this morning. He said, “I don’t know why yesterday was such a bad day, but things are going to be OK!!” His medical doctor caught him in the gym and asked how he was doing, he said that he had heard he had a bad day yesterday and wanted to check to see if everything was all right. Ryan told him that he was doing better, that it was more mental than anything else. I am so impressed that he is able to differentiate between the physical and mental aspect of this. I need to give him more credit! He told the doctor a little bit about the day and the doctor said, “It’s OK to have a 'crappy' day, let’s just chalk yesterday up to a 'crappy' day and move forward.” We all agreed!!
Audrey in Physical Therapy brought in some new T.E.D. hose for Ryan to try. Because of his erratic blood pressure, we are hoping that this will help the blood circulation. Because his legs are so thin, they wanted to try double layers for a few days to see if that would help. He had them on for a couple of hours and they seemed to work, TO GOOD. His blood pressure skyrocketed and his shoulders, neck and face were fire red and he complained of being hot. We took the nylons off and his normal color returned!!! Tomorrow we are going to try one layer and see how that works. We have decided that this is “trial and error.” Hopefully, we won’t have too many errors!!!
After the blood pressure episode, he had a lot of pain, the kind that feels like being buried in sand and a sunburn under his skin! Oh, what a feeling!! After he slept for about four hours, he felt much better. Tonight he is smiling and laughing. We love this part of the day!!!
Dean and I feel like we are “zeroing in” on some of the symptoms or warning signs and can kind of predict what is happening or what we need to do to try and fix the problem. We are slowly learning!!!
I am reading Elder Neal A. Maxwell’s book “If Thou Endure It Well,” he quotes David Brower as saying:
Love, Dean, Terry and Ryan
He has a hard time sitting at a 90◦ degree angle anyway, so the Eye Doctor “tweaked” his glasses so he can see better when looking down towards his lap. Yesterday during his Occupational Therapy class, Dana showed him some different types of bookstands to use when reading or working on a project and a mouth stick to be used to turn pages or push buttons, etc. etc. He was not having it!! He told us later that he didn’t want to go home because he wasn’t going to be able to do anything like he had done before. We shed a few (or a lot) of tears and really didn’t have any answers for him other than, “It is going to be OK.” His night nurse (who is a doll!) came in and noticed that he wasn’t smiling as normal and she asked him how he was doing. He told her that he was having a bad day and she asked why. He told her that he “had thought about things too much all day.” She said, “Oh, you had a 'growing' day!” We never know who is going to say the right thing, but she hit the nail on the head!!! After we said prayers, we all went to bed and hoped that we could get some sleep!!!
Sleep helps, a bright new day and things look much better!! Ryan was smiling again this morning. He said, “I don’t know why yesterday was such a bad day, but things are going to be OK!!” His medical doctor caught him in the gym and asked how he was doing, he said that he had heard he had a bad day yesterday and wanted to check to see if everything was all right. Ryan told him that he was doing better, that it was more mental than anything else. I am so impressed that he is able to differentiate between the physical and mental aspect of this. I need to give him more credit! He told the doctor a little bit about the day and the doctor said, “It’s OK to have a 'crappy' day, let’s just chalk yesterday up to a 'crappy' day and move forward.” We all agreed!!
Audrey in Physical Therapy brought in some new T.E.D. hose for Ryan to try. Because of his erratic blood pressure, we are hoping that this will help the blood circulation. Because his legs are so thin, they wanted to try double layers for a few days to see if that would help. He had them on for a couple of hours and they seemed to work, TO GOOD. His blood pressure skyrocketed and his shoulders, neck and face were fire red and he complained of being hot. We took the nylons off and his normal color returned!!! Tomorrow we are going to try one layer and see how that works. We have decided that this is “trial and error.” Hopefully, we won’t have too many errors!!!
After the blood pressure episode, he had a lot of pain, the kind that feels like being buried in sand and a sunburn under his skin! Oh, what a feeling!! After he slept for about four hours, he felt much better. Tonight he is smiling and laughing. We love this part of the day!!!
Dean and I feel like we are “zeroing in” on some of the symptoms or warning signs and can kind of predict what is happening or what we need to do to try and fix the problem. We are slowly learning!!!
I am reading Elder Neal A. Maxwell’s book “If Thou Endure It Well,” he quotes David Brower as saying:
Until one is committed there is hesitancy, the chance to draw back, always ineffectiveness. Concerning all acts of initiative (and creation), there is one elementary truth, the ignorance of which kills countless ideas and splendid plans: that the moment one definitely commits oneself, then Providence moves too. All sorts of things occur to help one that would never otherwise have occurred. A whole stream of events issues from the decision, raising in one’s favor all manner of unforeseen, incidents and meetings and material assistance, which no man could have dreamt would have come his way.It is tough to “commit” to this journey, but we know that our Heavenly Father will open doors that we never even thought possible. Our faith and hope for Ryan remains strong. We continue to receive letters, packages, phone calls, e-mails, cards and so on. We cannot tell each of you enough how much easier this journey is knowing that we have so much love and support.
Love, Dean, Terry and Ryan
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